Chronic Life-limiting Illness Research Articles

IJCM_200A: Symptom Burden Profile of individuals facing chronic life-limiting illnesses and barriers to effective management of symptoms in palliative care- Grounded theory qualitative study.

Background: Managing symptoms such as pain, breathlessness, and fatigue poses significant challenges in patients with advanced diseases. While palliative care has proven to enhance symptom control, there is a lack of exploration into the factors that contribute to successful symptom management in this specific context. This study was conducted to gain insight into the elements that support effective symptom management in palliative care within home settings and to explore the barriers that are encountered in this process. Objectives: To enumerate symptom burden profile of Patients facing chronic life limiting illness registered in Home based Palliative care program implemented by SVYM in Bengaluru and Hassan cities . Methodology: This is a Gounded theory study using qualitative semi- structured interviews. conducted between August 2023 to December 2023. Study participants are the primary caregivers of Patients with chronic life limiting illness in need of palliative care in Hassan and Bengaluru. 50 participants were interviewed through convenience sampling for the purpose of the study. Edmonton's Symptom assessment scale (ESAS) was used to assess the symptom burden of patient during the registration and 3 weeks post intervention. Conclusion: Effective symptom management relies on collaborative decision-making between patients and healthcare professionals, along with the coordinated efforts of a multidisciplinary team. Taking steps to address psychological distress and assessing the comprehension and expectations of patients and their families would enhance the overall effectiveness of symptom management in palliative care.

Impact of patient-centered communication on patient satisfaction scores in patients with chronic life-limiting illnesses: an experience from Kenya.

Patient satisfaction remains a key area of interest worldwide; utilizing a patient-centered communication approach, particularly with patients with chronic life-limiting illnesses may be one way to achieve this. However, there is a dearth of empirical information on the effect of patient-centered communication strategies in patients with chronic life-limiting illnesses in Kenya on patient satisfaction. The objective of this study was to assess the impact of patient-centered communication on patient satisfaction. We conducted our study at a tertiary teaching and referral hospital in Kenya. We utilized a quasi-experimental pre-test post-test study design and engaged 301 adult medical in-patients with chronic life limiting conditions. We randomized them to receive patient-centered communication, and evaluated the change in patient satisfaction scores using an adapted Medical Interview satisfaction Scale 21 (MISS 21). Two hundred and seventy-eight out of 301 recruited participants completed the study. The baseline characteristics of the participants randomized to the control and intervention arms were similar. Although both the control and intervention arms had a decline in the mean difference scores, the intervention arm recorded a larger decline, -15.04 (-20.6, -9.47) compared to -7.87 (-13.63, -2.12), with a statistically significant mean difference between the two groups at -7.16 (-9.67, -4.46). Participants in the intervention arm were less likely to: understand the cause of their illness (p < 0.001), understand aspects of their illness (p < 0.001), understand the management plan (p < 0.001), receive all the relevant information on their health (p < 0.001), and to receive adequate self-care information (p < 0.001). They were also less likely to acknowledge a good interpersonal relationship with the healthcare providers (p < 0.001), to feel comfortable discussing private issues (p < 0.004), and to feel that the consultation time was adequate (p < 0.001). Contrary to expectation, patient-centered communication did not result in improved patient satisfaction scores. Further studies can evaluate factors affecting and explaining this relationship and assess intermediate and long-term effects of provision of a patient-centered communication in diverse global contexts.

Long-Term Impact of the End-of-Life Care Nursing Education Consortium on Knowledge, Attitudes, and Practice (KAP) of Indian Nurses Working in Non-Palliative Care Settings: A KAP-GAP Analysis.

Background: The End-of-life Care Nursing Education Consortium (ELNEC) program aims to equip nurses with knowledge and skills in palliative and end-of-life care. While this program improves knowledge and attitudes of Indian nurses regarding palliative care and end-of-life care, its long-term impact on their knowledge, attitude, and clinical practice remains unknown. This study aims to assess ELNEC's long-term impact on knowledge, attitude, and practice of Indian nurses. Methods: A 18-month follow-up survey of practicing nurses at a tertiary care institute who completed ELNEC in September 2021. Data was collected between April-June 2023 via a questionnaire covering demographics, Palliative Care Quiz for Nurses (PCQN), Frommelt Attitude Toward Care of the Dying Scale Form B (FATCOD-B) and a clinical practice questionnaire developed and validated to access impact of ELNEC on clinical practice. Quantitative and qualitative data were assessed using Statistical package for social sciences and thematic analysis respectively. The 18-month follow-up PCQN and FATCOD-B scores were compared with the pre-ELNEC (baseline) and immediate post-ELNEC scores. Results: Out of 108 nurses, 69 responded with a response rate of 63.8%. The mean follow-up PCQN score was 9.03 ± 2.58; significantly higher than the pre-ELNEC (8.45 ± 1.88) but lower than the immediate post-ELNEC scores (10.2 ± 1.88). Attitudes toward end-of-life care declined over time but remained positive in the end-of-life care value and care of the dying. Thematic analysis of responses to open questions revealed that ELNEC motivated nurses to work in palliative care and care for patients with chronic life-limiting illnesses (n = 52, 75.3%), improved their nursing practice (n = 60, 86.9%), and helped enhance their communication skills (n = 51, 73.9%). Participants (n = 55, 79.7%) emphasized on regular palliative care training to reinforce their knowledge and skills. Conclusion: Compared with baseline, ELNEC leads to long-term improvement in practicing nurses' palliative care knowledge, clinical practice, communication skills and motivates them to work in palliative care.

Process of Maintaining Self in Individuals Living With Systemic Sclerosis: A Grounded Theory Study of American Women.

People with chronic illnesses may struggle to adapt psychologically to the illness experience and have feelings of identity loss, self-diminishment, and biographical disruption. This may limit people's ability to engage in optimal self-management. Systemic sclerosis is a debilitating, stigmatizing, and life-limiting progressive chronic illness with significant disfiguring effects. Little is known about the identity management process in people with disfiguring and debilitating conditions such as systemic sclerosis. The purpose of this study was to generate a grounded theory explicating the process of maintaining a sense of self in people living with systemic sclerosis. Fifteen women with systemic sclerosis were recruited to ensure representation of a range of illness duration and progression. Semi-structured interviews were conducted, transcribed, and analyzed using open, selective, and theoretical coding. A basic social process of "maintaining self" was generated from the data that explained the women's experience of living with systemic sclerosis and how they tried to hold on to their identity. Three core categories were identified. Adapting to changes are the behaviors that participants struggled through to carry on with their everyday lives. Dismantling of self was a distressing internal process where participants lost their sense of self and purpose. Restoring self was a transformative process that allowed participants to rewrite and rebuild their biographies. Findings suggest that the management of identity was important for understanding how people adapt to life with systemic sclerosis. This study can help nurses better understand how to support patients holistically with the management of systemic sclerosis.

Alzheimer Disease: A Life-Limiting Disease With a Burden of a Terminal Illness.

An estimated 6.5 million Americans live with Alzheimer dementia. Better understanding of advanced stages of Alzheimer disease (AD) and timely monitoring of its preventable complications would translate to improved survival and quality of life in this population. In this perspective review, we proposed shifting the narrative to recognizing AD as a chronic life-limiting illness instead of a terminal disease. In support of this view, we discussed the following: (1) the biochemical, cellular (preclinical), and clinical phases of AD; (2) survival after AD; (3) AD therapeutics and potential implications for the population with AD in the advanced stages. On the bases of the prolonged preclinical phase in AD, promising advances in AD therapeutics and the varying survival after AD, we proposed a new classification for AD and more broadly neurodegenerative disorders to be recognized as chronic life-limiting illnesses rather than terminal diseases with important implications for patients with AD in the advanced stages given the challenges that are specific to this population.

Palliative physiotherapy in community settings for people with terminal illness

ObjectivesThe need for palliative care is constantly growing worldwide. Palliative care is typically provided by a multidisciplinary team in community-based facilities. As part of this team, physiotherapists can effectively address...

Associations of Change in Body Size With All-Cause and Cause-Specific Mortality Among Healthy Older Adults

The association between weight change and subsequent cause-specific mortality among older adults is not well described. The significance of changes in waist circumference (WC) has also not been compared with weight change for this purpose. To examine the associations of changes in body weight and WC with all-cause and cause-specific mortality. This cohort study is a post hoc analysis of data from the Aspirin in Reducing Events in the Elderly (ASPREE) randomized clinical trial, which recruited participants between March 1, 2010, and December 31, 2014. The study included community-based older adults (16 703 Australian participants aged ≥70 years and 2411 US participants aged ≥65 years) without evident cardiovascular disease (CVD), dementia, physical disability, or life-limiting chronic illness. Data analysis was performed from April to September 2022. Body weight and WC were measured at baseline and at annual visit 2. Analysis models were adjusted for baseline body mass index because height and weight were measured at baseline, allowing for calculation of body mass index and other variables. Both body weight and WC changes were categorized as change within 5% (stable), decrease by 5% to 10%, decrease by more than 10%, increase by 5% to 10%, and increase by more than 10%. All-cause, cancer-specific, CVD-specific, and noncancer non-CVD-specific mortality. Mortality events were adjudicated by an expert review panel. Cox proportional hazards regression and competing risk analyses were used to calculate hazard ratios (HRs) and 95% CIs. Among 16 523 participants (mean [SD] age, 75.0 [4.3] years; 9193 women [55.6%]), 1256 deaths were observed over a mean (SD) of 4.4 (1.7) years. Compared with men with stable weight, those with a 5% to 10% weight loss had a 33% higher (HR, 1.33; 95% CI, 1.07-1.66) risk of all-cause mortality, and those with more than a 10% decrease in body weight had a 289% higher (HR, 3.89; 95% CI, 2.93-5.18) risk. Compared with women with stable weight, those with a 5% to 10% weight loss had a 26% higher (HR, 1.26; 95% CI, 1.00-1.60) risk of all-cause mortality, and those with more than a 10% decrease in body weight had a 114% higher (HR, 2.14; 95% CI, 1.58-2.91) risk. Weight loss was associated with a higher cancer-specific mortality (>10% decrease among men: HR, 3.49; 95% CI, 2.26-5.40; 5%-10% decrease among women: HR, 1.44; 95% CI, 1.46-2.04; >10% decrease among women: HR, 2.78; 95% CI, 1.82-4.26), CVD-specific mortality (>10% decrease among men: HR, 3.14; 95% CI, 1.63-6.04; >10% decrease among women: HR, 1.92; 95% CI, 1.05-3.51), and noncancer non-CVD-specific mortality (>10% decrease among men: HR, 4.98; 95% CI, 3.14-7.91). A decrease in WC was also associated with mortality. This cohort study of healthy older adults suggests that weight loss was associated with an increase in all-cause and cause-specific mortality, including an increased risk of cancer, CVD, and other life-limiting conditions. Physicians should be aware of the significance of weight loss, especially among older men.

Predictors of Documented Goals-of-Care Discussion for Hospitalized Patients With Chronic Illness.

Goals-of-care discussions are important for patient-centered care among hospitalized patients with serious illness. However, there are little data on the occurrence, predictors, and timing of these discussions. To examine the occurrence, predictors, and timing of electronic health record (EHR)-documented goals-of-care discussions for hospitalized patients. This retrospective cohort study used natural language processing (NLP) to examine EHR-documented goals-of-care discussions for adults with chronic life-limiting illness or age ≥80 hospitalized 2015-2019. The primary outcome was NLP-identified documentation of a goals-of-care discussion during the index hospitalization. We used multivariable logistic regression to evaluate associations with baseline characteristics. Of 16,262 consecutive, eligible patients without missing data, 5,918 (36.4%) had a documented goals-of-care discussion during hospitalization; approximately 57% of these discussions occurred within 24 hours of admission. In multivariable analysis, documented goals-of-care discussions were more common for women (OR=1.26, 95%CI 1.18-1.36), older patients (OR=1.04 per year, 95%CI 1.03-1.04), and patients with more comorbidities (OR=1.11 per Deyo-Charlson point, 95%CI 1.10-1.13), cancer (OR=1.88, 95%CI 1.72-2.06), dementia (OR=2.60, 95%CI 2.29-2.94), higher acute illness severity (OR=1.12 per National Early Warning Score point, 95%CI 1.11-1.14), or prior advance care planning documents (OR=1.18, 95%CI 1.08-1.30). Documentation of these discussions was less common for racially or ethnically minoritized patients (OR=0.823, 95%CI 0.75-0.90). Among hospitalized patients with serious illness, documented goals-of-care discussions identified by NLP were more common among patients with older age and increased burden of acute or chronic illness, and less common among racially or ethnically minoritized patients. This suggests important disparities in goals-of-care discussions.

Do We Need Palliative Care in Pediatric Nephrology? Patients' and Caregivers' Disease Experience.

Chronic life-limiting illnesses such as chronic kidney disease (CKD) require integral support to the families concerned in addition to medical care. Palliative care is an option to facilitate families to address future concerns, such as procedures for acute life-threatening complications, or to relieve physical and psychosocial suffering. The exact needs of patients or parents have not yet been investigated. To assess needs in supportive palliative care, we conducted a monocentric qualitative interview study. We included patients 14 to 24 years old as well as parents of younger children (below 14 years) with CKD ≥ stage 3. In total, fifteen interviews were conducted. Data were analyzed with a deductive and descriptive approach using qualitative content analysis as described by Mayring. Sociodemographic data and basic information of disease were collected using questionnaires. In contrast to caregivers, adolescents and young adults do not express worries about their own mortality or reduced life expectancy. Rather, they report about their limitations to everyday life associated with the disease, especially in the areas of school and work. They wish to live a normal life. Caregivers are concerned about the future and the disease trajectory. They also describe difficulties in balancing the management of the disease with other responsibilities such as work and healthy siblings' needs. Patients and caregivers appear to need a chance to talk about their everyday struggles and disease-related fears and concerns. Talking about their concerns and needs may help deal with their emotions and facilitate acceptance of their situation characterized by a life-limiting disease. Our study confirms the need for psychosocial support in pediatric nephrology to address the needs of the affected families. This can be offered by pediatric palliative care teams.

THE THERAPEUTIC POTENTIAL OF GUIDED IMAGERY AND MUSIC FOR PARENTS WITHIN A PEDIATRIC PALLIATIVE CARE SETTING

Parents caring for a child with a chronic life-limiting illness experience a wide range of therapeutic needs. This manuscript investigates the potential of Guided Imagery and Music (GIM) as a multidimensional therapeutic approach for parents with children in pediatric palliative care. Drawing upon Goldberg's (2004) holographic field theory model, Clark's (2014) synthesis model of GIM, and Bonde's (2000) three levels of metaphor, this paper explores the multifaceted and multilayered nature of GIM grounded in the author’s clinical practice and includes a composite case description of parents within a pediatric palliative care program. GIM’s capacity to hold and facilitate expression of complex emotions on multiple levels of consciousness before and during bereavement can connect parents with their inner wisdom during this challenging time.

Developing a novel integrated geriatric palliative care consultation program for the emergency department.

With the aging of our population, older adults are living longer with multiple chronic conditions, frailty, and life-limiting illnesses, which creates specific challenges for emergency departments (EDs). Older adults and those with serious illnesses have high rates of ED use and hospitalization, and the emergency care they receive may be discordant with their goals and values. In response, new models of care delivery have begun to emerge to address both geriatric and palliative care needs in the ED. However, these programs are typically siloed from one another despite significant overlap. To develop a new combined model, we assembled stakeholders and thought leaders at the intersection of emergency medicine, palliative care, and geriatrics and used a consensus process to define elements of an ideal model of a combined palliative care and geriatric intervention in the ED. This article provides a brief history of geriatric and palliative care integration in EDs and presents the integrated geriatric and palliative care model developed.

Surgical Care Services in inaccessible zones: Targeted Palliative Care Accessibility Models for patients in resource-limited settings.

The coronavirus disease 2019 (COVID-19) pandemic has caused a paradigm shift in the cancer care landscape, shifting from a palliative care approach to a need-based approach. In these current and upcoming future times, patient- and community-centred research becomes the cornerstone of collaborative assessment efforts for understanding and assessing Targeted Palliative Care (TPC) Accessibility Models for patients with oncological malignancies in resource-limited settings. This short communication focuses on the models available for TPC for the continuation of care in oncological settings in resource-limited geographic areas. Some programmes have used a Mixed Method Approach, highlighting their importance based on engagement volunteers and building trust and relationships in the community. Other studies have addressed the care system using a Rural Palliative Supportive Service Model for older adults living with life-limiting chronic illness, showing that home-based treatment for this population is feasible. Moreover, the Home Palliative Care Units (HPCU) model showed promising results in that patients cared for by HPCU had a fewer emergency visits and hospital admissions, in addition to being more likely to die at home with adequate palliation. During the ongoing pandemic, patients have experienced rapid clinical decline, requiring urgent conversations about their care wishes. They have been forced to make decisions on so-called 'Life and death' issues. In this article we discuss the advantages, disadvantages, and possible changes implemented in the context of cancer surgical care in resource-limited settings, in order to create a better assessment of geographic or demographic-based, patient- and community-centred TPC accessibility models for a more holistic development of cancer care programs.

Efficacy of a Communication-Priming Intervention on Documented Goals-of-Care Discussions in Hospitalized Patients With Serious Illness

High-quality goals-of-care communication is critical to delivering goal-concordant, patient-centered care to hospitalized patients with chronic life-limiting illness. However, implementation and documentation of goals-of-care discussions remain important shortcomings in many health systems. To evaluate the efficacy, feasibility, and acceptability of a patient-facing and clinician-facing communication-priming intervention to promote goals-of-care communication for patients hospitalized with serious illness. This randomized clinical trial enrolled patients from November 6, 2018, to February 18, 2020. The setting was 2 hospitals in an academic health care system in Seattle, Washington. Participants included hospitalized adults with chronic life-limiting illness, aged 65 years or older and with markers of frailty, or aged 80 years or older. Data analysis was performed from August 2020 to August 2021. Patients were randomized to usual care with baseline questionnaires (control) vs the Jumpstart communication-priming intervention. Patients or surrogates in the intervention group and their clinicians received patient-specific Jumpstart Guides populated with data from questionnaires and the electronic health records (EHRs) that were designed to prompt and guide a goals-of-care discussion. The primary outcome was EHR documentation of a goals-of-care discussion between randomization and hospital discharge. Additional outcomes included patient-reported or surrogate-reported goals-of-care discussions, patient-reported or surrogate-reported quality of communication, and intervention feasibility and acceptability. Of 428 eligible patients, this study enrolled 150 patients (35% enrollment rate; mean [SD] age, 59.2 [13.6] years; 66 women [44%]; 132 [88%] by patient consent and 18 [12%] by surrogate consent). Seventy-five patients each were randomized to the intervention and control groups. Compared with the control group, the cumulative incidence of EHR-documented goals-of-care discussions between randomization and hospital discharge was higher in the intervention group (16 of 75 patients [21%] vs 6 of 75 patients [8%]; risk difference, 13% [95% CI, 2%-24%]; risk ratio, 2.67 [95% CI, 1.10-6.44]; P = .04). Patient-reported or surrogate-reported goals-of-care discussions did not differ significantly between groups (30 of 66 patients [45%] vs 36 of 66 patients [55%]), although the intrarater consistency of patient and surrogate reports was poor. Patient-rated or surrogate-rated quality of communication did not differ significantly between groups. The intervention was feasible and acceptable to patients, surrogates, and clinicians. In this randomized clinical trial, a patient-facing and clinician-facing communication priming intervention for seriously ill, hospitalized patients promoted EHR-documented goals-of-care discussions before discharge with good feasibility and acceptability. Communication-priming interventions should be reexamined in a larger randomized clinical trial to better understand their effectiveness in the inpatient setting. ClinicalTrials.gov Identifier: NCT03746392.

Early Palliative Care Initiation: Role of the Primary Care Clinician

Palliative care provided to patients with chronic life-limiting illnesses shows improvement in symptom management, quality of life, and caregiver support while reducing cost of care. Early initiation of palliative care faces a multitude of barriers in the primary care setting, including provider confidence, coordination and implementation, education, and family and patient misconceptions. A team-based approach along with additional education, clear referral triggers, and resources for advanced-care planning discussions allows providers to overcome many of these barriers. With the population’s advancing age, it is essential that primary care providers are properly prepared for early initiation of palliative care.

Facilitating advance care planning in the general practice setting for patients with a chronic, life-limiting illness: protocol for a phase-III cluster-randomized controlled trial and process evaluation of the ACP-GP intervention

BackgroundAdvance care planning (ACP), a process of communication about patients’ preferences for future medical care, should be initiated in a timely manner. Ideally situated for this initiation is the general practitioner (GP). The intervention to improve the initiation of ACP for patients with a chronic life-limiting illness in general practice (ACP-GP) includes an ACP workbook for patients, ACP communication training for GPs, planned ACP conversations, and documentation of ACP conversation outcomes in a structured template. We present the study protocol of a Phase-III randomized controlled trial (RCT) of ACP-GP that aims to evaluate its effects on outcomes at the GP, patient, and surrogate decision maker (SDM) levels; and to assess the implementation process of the intervention.MethodsThis RCT will take place in Flanders, Belgium. Thirty-six GPs, 108 patients with a chronic, life-limiting illness, and their (potential) SDM will be recruited, then cluster-randomized to the ACP-GP intervention or the control condition. The primary outcome for GPs is ACP self-efficacy; primary outcome for patients is level of ACP engagement. Secondary outcomes for GPs are ACP practices, knowledge and attitudes; and documentation of ACP discussion outcomes. Secondary outcomes for patients are quality of life; anxiety; depression; appointment of an SDM; completion of new ACP documents; thinking about ACP; and communication with the GP. The secondary outcome for the SDM is level of engagement with ACP. A process evaluation will assess the recruitment and implementation of the intervention using the RE-AIM framework.DiscussionWhile the general practice setting holds promise for timely initiation of ACP, there is a lack of randomized trial studies evaluating the effectiveness of ACP interventions implemented in this setting. After this Phase-III RCT, we will be able to present valuable evidence of the effects of this ACP-GP intervention, with the potential for offering a well-tested and evaluated program to be implemented in general practice. The results of the process evaluation will provide insight into what contributes to or detracts from implementation success, as well as how the intervention can be adapted to specific contexts or needs.Trial registrationProspectively registered at with ISRCTN (ISRCTN12995230); registered 19/06/2020.

"I Want That Life a Lot…How on Earth Do I Get That?" Examining Challenges for Men With Barth Syndrome in Their Transitions to Adulthood.

vFor youth with life-limiting chronic illnesses, transitioning to adulthood in line with age-norms may be difficult due to symptom severity and shortened survival. This study explores whether individuals with Barth syndrome (BTHS), a condition uniquely characterized by extreme prognostic uncertainty, experience similar or different challenges compared to youth with other conditions. During focus groups with adults with BTHS (n = 12) and caregivers (n = 13), participants reported that the ability to independently manage one’s health condition, the social/emotional impacts of BTHS, and the ability to set goals in the context of future uncertainty challenge their transition to adulthood. This aligns with prior research, indicating that prognostic uncertainty may hinder long-term goal setting in BTHS. Implications of these findings include providing strategies for identifying meaningful alternative goals for individuals with chronic illnesses to target, promoting increased autonomy earlier in youth, and fostering coping strategies to manage non-disease related impacts.

Supporting Interprofessional Engagement in Serious Illness Conversations: An Adapted Resource.

Communication is vital to quality palliative care nursing particularly when caring for someone with a chronic life-limiting illness and their family. Conversations about future decline and preferred care are considered challenging and difficult and are often avoided, resulting in missed opportunities for improving care. To support more, earlier, better conversations, health care organizations in British Columbia, Canada, adopted the Serious Illness Care Program inclusive of the Serious Illness Conversation Guide developed by Ariadne Labs. Workshops for interprofessional team members have been held throughout the province. Nurses and allied health identified the need for more guidance in using the guide in the contexts of their clinical practice. Specifically challenging has been prognosis communication that falls within the scope of practice for each profession. Informed by workshop feedback, an expert team of nurse clinicians and educators tailored an interprofessional clinician reference guide to optimize the guide's use across health care settings. In this article, we present the adaptations focusing on (1) the role of nurses and allied health in serious illness communication, (2) prognosis communication, and (3) a range of role-play scenarios specific to nonphysician practice for serious illness conversations that may arise within the process of care.

Defining and implementing early palliative care for persons diagnosed with a life-limiting chronic illness: a scoping review protocol.

This review will explore definitions of early palliative care and describe how it has been implemented for those diagnosed with a life-limiting chronic illness. People with life-limiting chronic illnesses who receive palliative care interventions have increased quality of life, better symptom management, and are more likely to have advance care plans than patients who do not have life-limiting chronic illness. It is therefore best practice to encourage early identification of persons in need of palliative care services. However, there is uncertainty over what is considered to be "early palliative care" and this presents a barrier to evaluating associated outcomes. All literature that defines an early palliative care approach in adults (aged 18 years and older) with a life-limiting chronic illness in any health care setting will be included in this review. All countries and sociocultural settings will be included. This scoping review will follow JBI methodology. A comprehensive search of academic and gray literature using MEDLINE (Ovid), CINAHL (EBSCO), Embase (Ovid), PsycINFO (Ovid), Web of Science Core Collection, Ovid Cochrane Library, and ProQuest (Health and Medicine and Sociology Collections) will be utilized. Articles will be screened for inclusion by two independent reviewers. Results will be extracted using a customized tool and summarized in a final report using a narrative synthesis presented in table form.

Conflicting Orders in Physician Orders for Life-Sustaining Treatment Forms.

Many older persons with chronic illness use Physician Orders for Life-Sustaining Treatment (POLST) to document portable medical orders for emergency care. However, some POLSTs contain combinations of orders that do not translate into a cohesive care plan (eg, cardiopulmonary resuscitation [CPR] without intensive care, or intensive care without antibiotics). This study characterizes the prevalence and predictors of POLSTs with conflicting orders. Retrospective cohort study. Large academic health system. A total of 3,123 POLST users with chronic life-limiting illness who died between 2010 and 2015 (mean age = 69.7 years). In a retrospective review of all POLSTs in participants' electronic health records, we describe the prevalence of POLSTs with conflicting orders for cardiac arrest and medical interventions, and use clustered logistic regression to evaluate potential predictors of conflicting orders. We also examine the prevalence of conflicts between POLST orders for antibiotics and artificial nutrition with orders for cardiac arrest or medical interventions. Among 3,924 complete POLSTs belonging to 3,123 decedents, 209 (5.3%) POLSTs contained orders to "attempt CPR" paired with orders for "limited interventions" or "comfort measures only"; 745/3169 (23.5%) POLSTs paired orders to restrict antibiotics with orders to deliver non-comfort-only care; and, 170/3098 (5.5%) POLSTs paired orders to withhold artificial nutrition with orders to deliver CPR or intensive care. Among POLSTs with orders to avoid intensive care, orders to attempt CPR were more likely to be present in POLSTs completed earlier in the patient's illness course (adjusted odds ratio = 1.27 per twofold increase in days from POLST to death; 95% confidence interval = 1.18-1.36; P < .001). Although most POLSTs are actionable by clinicians, 5% had conflicting orders for cardiac arrest and medical interventions, and 24% had one or more conflicts between orders for cardiac arrest, medical interventions, antibiotics, and artificial nutrition. These conflicting orders make implementation of POLST challenging for clinicians in acute care settings.

Are family carers part of the care team providing end-of-life care? A qualitative interview study on the collaboration between family and professional carers

Background: The attention of healthcare professionals is directed mainly towards the recipients of care and often insufficiently towards family carers. However, an effective collaboration between professionals and family carers is vital to provide quality palliative and end-of-life care. Such collaboration is under-studied in a palliative care context. Aim: This study aimed to investigate how family carers of people who live at home with a life-limiting chronic illness experience and perceive collaboration with different healthcare professionals in the last phase of life. Design: Face-to-face semi-structured interviews were conducted with the primary family carers of people with a life-limiting chronic illness. Interpretative phenomenological analysis was used to analyse the data. Setting/participants: A heterogeneous sample of 30 family carers of people with cancer, heart failure or dementia was recruited through a variety of care providers and services, in order to reflect the heterogeneity of caregiving in serious illness. Results: Five main themes emerged from interpretative phenomenological analysis that describe the quality of the collaboration between family carers and professionals: respecting family carers both as someone with care needs and as a member of the care team; the continuous availability and accessibility of healthcare professionals; the provision of information and communication including family carer issues; the coordination of care between all parties and contextual factors. The dominant experience by family carers was one of missed opportunities across these themes. Conclusions: This qualitative study about the experiences and perceptions of family carers of people with a chronic life-limiting illness living at home regarding the collaboration with different healthcare providers in the last phase life, showed that family carers experience a lot of possibilities, but perceive missed opportunities as well, for healthcare professionals to effectively collaborate with them for palliative care.